[Naomi]

Hi Lucy:
I also had ATG (rabbit) and had a reaction. The doc stated that it was from fluid overload. Went into cardiac failure, vomiting, 104+ fever. Stopped the iv, got me back on schedule and finished up the ATG at a slower pace and less fluid. Did nothing for me as far as red cells were concerned.
Have only heard of one person it has helped.
Naomi

[Naomi]

Hi Ensnee:
Hopefully this is “third time’s a charm” for Hans.
It was for me.
Good Luck and prayers are with you.
Naomi

[Naomi]

Margaret I am sorry to hear about Luke. Remember the good times to carry you through the days ahead.
Naomi

[Naomi]

I also have the discolorations on my legs. The dermo called it necrobiosis. It is usually connected with diabetes which I do not have. Maybe it is just another symptom of the MDS. I did receive shots to remove some of them about 4 years ago, but they came back, so I have just left them alone. They do not hurt.

Naomi

[Naomi]

Hi Bhanson:
I am on revlimid and it is my understanding that when it comes on the market it will be offered to people with 5q- and currently receiving rbc txs. It is supposed to be strictly monitered.
I am sorry to be a “wet blanker”. So many people are wishing this to be the drug to help all of them and I wish it was, but from what I have heard it will not be that.
Sorry it isn’t better news.
Naomi

[Naomi]

DEar Marie:
I am so sad to hear about Christopher. He and Walden will be looking down on you and the rest of the family and taking care of you.
My prayers continue for strength for all of you
Naomi

[Naomi]

Hi Sophie:
Connie is a trial coordinator. The doc is the one to prescribe the revlimid. This is an extension of the trial that I have been on.
You can reach Connie at Connie_Sparks@URMC.Rochester.edu and she will answer questions for you.
The requirement for this trial is to be transfusion dependent and have 5q- as your diagnosis.
Hope this helps
Naomi

[Naomi]

Marie,
You, Chris and all the family are in my prayers. Take care
Naomi

[Naomi]

Hi Carrie:
I am so sorry that your dad has gone. You did so much for him, trying to find something to help him get better. He is no longer suffering and is at peace. Keep this in mind as days go by and remember the good times you had with him.
Prayers are with you and your family
Naomi

[Naomi]

Okay Tahoe I got 200 What did you get?????
Fun—took a bit to get it oging
Naomi

[Naomi]

Hi John:
My side effects are minimal. I have diarrhea, but is controlled. There is ringing in my ears, but my kids always said that I was a little dingy. It is something I got used to, but at first it was a bit louder than usual. Also have tingling in my fingers, but have not lost the feeling in them. Other than that the med is great for me. Of course just like everything else, it is not for everyone. Hopefully it will be worked on and be for most of us with the red cell problems. Then we will go after all the rest of the MDS problems.

Naomi

[Naomi]

John: It is not the “Big Pharma” that is really deep down doing all this. It is the stock holders who demand the companies pay the dividends. They cannot operate unless they pay the dividends to the stock holders, as that is where their money comes from. It is vicious circle and if the stock holders are not payed, they withdraw their $$$$ from the companies. Who are the stock holders????why they are you and me and lots of other people.
Does this make sense??
Naomi

[Naomi]

Welcome back Sandy!
Please post and keep us updated on little Joe. I think of you often.
Naomi

[Naomi]

Karen, a correction…I live in Dansville, NY. Lived in OH for too long. Ha!
Naomi

[Naomi]

Karen:
Please add these names to your list:
Naomi Sapp, Dansville, OH
MIchael and Marshs Backus, Dansville, NY
Gail Parmentier, Woonsocket, RI

Glad to help on this.
Naomi

[Author]

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